From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326. Copyright Brooks Publishing – Do not reproduce without permission. A Child with Fetal Alcohol Syndrome Sterling K. Clarren, Heather Carmichael Olson, Sandra G.B. Clarren, and Susan J. Astley Alcohol is a common human teratogen that, when ingested by a pregnant woman, can produce a wide array of fetal complications. The fetus's developing brain seems most sensitive to prenatal alcohol exposure: Alcohol-related brain damage can be quite diffuse, ranging from microcellular, neurochemical aberrations to macroscopic malformations (Stratton, Howe, & Battaglie, 1996). The neurological, cognitive, and behavior problems that arise from prenatal alcohol exposure are protean in their severity and diversity. Other prenatal determinants - for example, genetic factors or teratogenic exposures that lead to specific conditions, such as attention-deficit/hyperactivity disorder (ADHD) or learning disabilities-can further affect the developmental outcome of a child prenatally exposed to alcohol. Aversive experiences after birth and throughout life also can have a profound influence on an individual's performance in these domains. Complexity in etiology and outcome is the rule, not the exception, in working with children who have been exposed to alcohol. Fetal alcohol syndrome (FAS) does not represent the totality of individuals exposed to alcohol in gestation or the entire group of people with impairments related to prenatal alcohol exposure. Rather, FAS is defined by specific aberrations in growth, facial form, and central nervous system (CNS) functioning (Stratton et al., 1996). FAS is noteworthy because it can be specifically identified as a condition due to gestational alcohol abuse. Thus, it is an important starting point for outreach to women who are at high risk of having other children with disabilities. In addition, this designation assists government systems related to education, social service, and criminal justice in planning for service needs. The label FAS is actually less helpful for individuals who have the disorder themselves as it does not, in and of itself, guide parents or professionals in proceeding with interventions specific to the child. Moreover, the term excludes many individuals with the same degree of developmental delays related to alcohol exposure who do not have the diagnostic markers of FAS. Nevertheless, there are two important reasons to examine whether a child's impairments are related to alcohol teratogenesis, especially to FAS. First, knowing that alcohol exposure occurred during pregnancy helps a clinician understand that if the child has a complex profile of cognitive or behavior difficulties, then alcohol-related damage may be one antecedent in a larger set of etiological factors. Children with FAS or related conditions may generally have some combination of ADHD, learning delays, language processing and usage difficulties, problems in planning and judgment, or increased soft neurological signs. In addition, if the child is school-age or older, "secondary disabilities" may have emerged form experiences of frustration, failures, and lack of acceptance by peers and adults, particularly if the full extent of the child's disability has not been recognized. Clearly, a team approach to assessment and intervention is necessary for understanding such complex problems. A diagnosis often initiates an important spontaneous intervention by changing the attitude of family members and teachers working with the child, so they can see that the child "can't" rather than "won't" behave in an acceptable manner. Members of the child's community can then understand that the child is disabled and not simply disobedient (Streissguth, Barr, Kogan, & Bookstein, 1996). Second, recognizing that a child has FAS may help prevent prenatal alcohol exposure in the biological mother's future pregnancies. In an assessment of FAS, both the biological mother and her child are the focus of the team's efforts. Women who have children with FAS usually drink regularly and in high volume during pregnancy. Although it is true that women who consume alcohol in the gestation period may by committing "fetal abuse", the case of a woman drinking purposefully during pregnancy to harm her child is rare. It is therapeutic to inform biological mothers of this problem so that they know that the child is receiving appropriate supports and everyone can proceed in a positive manner. Although the process of working with the biological mother can be complex and involves a different group of professionals than those needed to assess the child, it is critical and ethically necessary that these
A Child with Fetal Alcohol Syndrome
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A Child with Fetal Alcohol SyndromeFrom Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
A Child with Fetal Alcohol Syndrome Sterling K. Clarren, Heather Carmichael Olson, Sandra G.B. Clarren, and Susan J. Astley Alcohol is a common human teratogen that, when ingested by a pregnant woman, can produce a wide array of fetal complications. The fetus's developing brain seems most sensitive to prenatal alcohol exposure: Alcohol-related brain damage can be quite diffuse, ranging from microcellular, neurochemical aberrations to macroscopic malformations (Stratton, Howe, & Battaglie, 1996). The neurological, cognitive, and behavior problems that arise from prenatal alcohol exposure are protean in their severity and diversity. Other prenatal determinants - for example, genetic factors or teratogenic exposures that lead to specific conditions, such as attention-deficit/hyperactivity disorder (ADHD) or learning disabilities-can further affect the developmental outcome of a child prenatally exposed to alcohol. Aversive experiences after birth and throughout life also can have a profound influence on an individual's performance in these domains. Complexity in etiology and outcome is the rule, not the exception, in working with children who have been exposed to alcohol. Fetal alcohol syndrome (FAS) does not represent the totality of individuals exposed to alcohol in gestation or the entire group of people with impairments related to prenatal alcohol exposure. Rather, FAS is defined by specific aberrations in growth, facial form, and central nervous system (CNS) functioning (Stratton et al., 1996). FAS is noteworthy because it can be specifically identified as a condition due to gestational alcohol abuse. Thus, it is an important starting point for outreach to women who are at high risk of having other children with disabilities. In addition, this designation assists government systems related to education, social service, and criminal justice in planning for service needs. The label FAS is actually less helpful for individuals who have the disorder themselves as it does not, in and of itself, guide parents or professionals in proceeding with interventions specific to the child. Moreover, the term excludes many individuals with the same degree of developmental delays related to alcohol exposure who do not have the diagnostic markers of FAS. Nevertheless, there are two important reasons to examine whether a child's impairments are related to alcohol teratogenesis, especially to FAS. First, knowing that alcohol exposure occurred during pregnancy helps a clinician understand that if the child has a complex profile of cognitive or behavior difficulties, then alcohol-related damage may be one antecedent in a larger set of etiological factors. Children with FAS or related conditions may generally have some combination of ADHD, learning delays, language processing and usage difficulties, problems in planning and judgment, or increased soft neurological signs. In addition, if the child is school-age or older, "secondary disabilities" may have emerged form experiences of frustration, failures, and lack of acceptance by peers and adults, particularly if the full extent of the child's disability has not been recognized. Clearly, a team approach to assessment and intervention is necessary for understanding such complex problems. A diagnosis often initiates an important spontaneous intervention by changing the attitude of family members and teachers working with the child, so they can see that the child "can't" rather than "won't" behave in an acceptable manner. Members of the child's community can then understand that the child is disabled and not simply disobedient (Streissguth, Barr, Kogan, & Bookstein, 1996). Second, recognizing that a child has FAS may help prevent prenatal alcohol exposure in the biological mother's future pregnancies. In an assessment of FAS, both the biological mother and her child are the focus of the team's efforts. Women who have children with FAS usually drink regularly and in high volume during pregnancy. Although it is true that women who consume alcohol in the gestation period may by committing "fetal abuse", the case of a woman drinking purposefully during pregnancy to harm her child is rare. It is therapeutic to inform biological mothers of this problem so that they know that the child is receiving appropriate supports and everyone can proceed in a positive manner. Although the process of working with the biological mother can be complex and involves a different group of professionals than those needed to assess the child, it is critical and ethically necessary that these
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
diagnostic and intervention efforts be linked (Astley, Bailey, Talbot, & Clarren, 1998). ASSESSMENT FOR DIAGNOSIS OF FETAL ALCOHOL SYNDROME The features of FAS are not dichotomous (present or absent) but, rather, each feature is on a continuum from clearly within the normal range to clearly the feature of FAS. Without suitable guides and standards, this leads clinicians to variable judgment in final diagnosis. To minimize clinical variability, the diagnosis of FAS or related conditions is made using a sequence of four 4-digit Likert scales (Astley & Clarren, 1997) in the clinics of the Washington State FAS Diagnostic and Prevention Network. Delays in growth, facial morphology, organic brain damage, and teratogenic exposure to alcohol are each evaluated separately. A "1" on any scale means a finding within the normal range. A "4" on any scale represents a finding that corresponds with accepted cases of FAS. A score of "2" or "3" specifically defines intermediate steps between clearly typical and atypical. It is important to note that these scales do not necessarily measure increasing severity; rather, they are scales of greater clinical confidence that the sought FAS characteristic is present. A child with a "4" for brain damage, for example, meets the medical criteria for a structurally altered brain but may be more cognitively or behaviorally within the normal range than a child with a score of "2" in whom the etiological relationship between brain structure and brain function is diagnostically indeterminate. Similarly, a child with a "4" for facial morphology has all of the facial diagnostic features of FAS yet may be somewhat more attractive than child with a score of "2"-who has an unusual face, but not the facial features common to FAS. The final category based on examination of the child is whether he or she has delayed growth. Establishing if a person's height or weight is "blunted", due to prenatal reasons, from its genetic potential is actually the most difficult part of diagnosis. Growth retardation is defined as a "4" when a child's measurements are less than 2 standard deviations (SD) from the mean after height (adjustment for mean parent height) and for weight. The alcohol exposure scale is judged by whether the dose exposure pattern approaches on that causes fetal damage in animal models and whether the information is documented or speculative. Dose response relationships between maternal alcohol intake and fetal outcomes remain complex and somewhat vague for various reasons. Obtaining accurate information on alcohol intake during pregnancy is difficult because it is almost always recorded in retrospect, with the potential problems of the mother's poor memory or denial. Many maternal and fetal factors also play key roles in determining if any specific dosing pattern is damaging to that individual. In the majority of animal studies in multiple species, it has been necessary to give high dosage exposures, with peak blood alcohol concentrations (BAC) in the 100-200 milligrams per kilogram (mg/kg) range, and to deliver them at least weekly for the first several weeks of pregnancy. Even these high doses are not uniformly teratogenic; they are "high risk". When women report consumption likely to cause drunkenness (an approximate BAC = 100 mg/kg or higher) on a weekly basis, this is considered a "4". Any other pattern of definite exposure is judged a "3" because no dose is guaranteed to be absolutely safe. The term FAS applies to children who have all "4"s or combinations of at least two "4"s and no more than two "3"s on the four scales. Other scores are converted to words in combinations of the descriptive terms: sentinel physical findings; static encephalopathy or neurobehavior disorder; and alcohol exposed, alcohol unexposed, and alcohol exposure unknown. A full explanation of this approach and its diagnostic terms as well as a method for judging the importance of these comorbidities, are available in the Diagnostic Guide for Fetal Alcohol Syndrome and Related Conditions (Astley & Clarren, 1997). The fetal alcohol diagnosis must be considered in the context of other prenatal and postnatal factors that contribute to the unique findings for each individual. CASE STUDY INVOLVING AN INTERDISCIPLINARY TEAM ASSESSMENT The FAS clinic team is comprised of individuals who help collect and interpret the data needed for diagnosis, assist in developing a comprehensive intervention plan, or both. Professionals are needed
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
from the disciplines of medicine, psychology, speech-language pathology, occupational therapy, social work, public health nursing, and family advocacy. It is also helpful to have a staff epidemiologist who can create data forms and databases and direct clinical research efforts based on these data. The remainder of this chapter presents the composite case of Anna, a child with FAS. This case illustrates the following steps in the diagnostic interdisciplinary team process: 1) preliminary team conference; 2) team assessment, including caregiver interview, physical examination of the child, and assessments of the child by occupational therapy, speech-language pathology, and psychology team members; 3) team deliberation; 4) case discussion and feedback to the parents; 5) additional case discussion and a therapeutic debriefing with the parents; 6) further case discussion and a therapeutic debriefing with the child (when appropriate); and 7) staff debriefing. Beside preserving patient confidentially, employing a composite case permits discussion of a combination of FAS characteristics that would not necessarily be found in any one case. Exploring the case of a primary school-age child allows a more extended developmental perspective. It also sensitizes the reader to the full scope of difficulties that children with FAS have by the time they reach elementary school, which generally are not clear in preschool. Overall, although Anna is fictitious, she presents the typical challenges in FAS diagnosis, treatment, and family support. Record Review and Preliminary Team Conference Anna's adoptive parents initially called the FAS clinic for an appointment. The family had been referred to the clinic by Anna's teacher, who had taken a workshop on FAS, and by her physician. As is frequently the case, Anna's doctor had not previously considered an alcohol-related diagnosis but agreed to the assessment when Anna's parents sought his advice (Clarren &Astley, 1998). The family had been sent an extensive intake form. This form was specifically designed to obtain historical data from the family that would help the clinic team reach a fair and complete conclusion. These data included 1) growth records; 2) childhood photos; 3) medical records of congenital abnormalities; 4) neurological problems and ongoing health issues; 5) previous evaluations of cognition and behavior; 6) reports of response to psychotropic medication; 7) specific documentation of alcohol exposure in pregnancy; 8) exposure to other drugs or additional complications during pregnancy; 9) academic problems or cognitive delays of the biological parents or their families; 10) a general overview of the family's genetic background; 11) reports of multiple placements and issues of caregiver attachment; 12) abuse or neglect; and 13) a general record of problems or difficulties with family, peers, and school. This intake form is available in the Diagnostic Guide for Fetal Alcohol Syndrome and Related Conditions (Astley & Clarren, 1997). At the preliminary team conference, these extensive past records were reviewed, and the following summary was presented to the clinic staff by the physician and psychologist. Anna was 8 years and 1 month old. She was born to married, Caucasian parents when her mother was 28 years of age and her birth father was 35 years old. This was the third live born infant for Anna's birth mother. Her pregnancy was complicated by extensive alcohol use. The birth father reported that he would generally buy one case of beer daily and that when it was available he and his wife would each drink about half of this amount in the evening. This level of drinking persisted through the first half of the pregnancy. During the second half of Anna's gestation, Anna's birth father drank more while her mother drank less, although she still probably ingested about a six-pack daily until delivery. Anna's mother also used marijuana about once a month and smoked half a pack of cigarettes each day. The pregnancy was further complicated by physical abuse of the mother by her husband, although this abuse never led to a medical assessment during the pregnancy. Both biological parents reported that their own fathers, but not their mothers, had been heavy drinkers. Neither biological parent reported significant academic problems, and both had finished high school. Anna was born at term, and her delivery was described as typical. At birth, she weighed 2.2 kilograms (kg) and her length was 44 centimeters (cm). Anna was always described as small. While in foster care, Anna received a nutritional evaluation and a thyroid screen. Anna grew steadily but more slowly than
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
typically developing children. One previous foster parent repeatedly asked her physician to hospitalize the infant because she ardently believed that her inability to "fatten the baby up" meant that the baby was ill. Anna had an inguinal hernia that was repaired when she was 9 months old. She had chronic problems with otitis media until she reached age 3, though she never had a documented hearing loss. Despite these problems, she had been in good health overall. After Anna was born, she lived with her parents for about 6 months, then she was removed from parental custody after the biological mother was several beaten by her husband. In addition, investigators found that the child was living in an unclean apartment without food or appropriate clothing. Six month-old Anna was placed in foster care and moved periodically over the next two and a half years while social service agencies determined that neither parent could control their drinking and regain custody. Anna was then made available for adoption and was retained by her last foster family (mother, father, and a brother 3 years older than Anna) when she was about 3 years of age. The adoption was legalized when Anna was almost 5 years old. At the time of the clinic visit, Anna's adoptive parents reported that she had shown behavior problems since 30 months of age. Sometimes Anna was very negative and aggressive, especially with family members, while at other times she was cooperative and pleasant. Upon entering preschool, she was reported to be quiet but soon showed qualities similar to those observed at home. In fact, she was so aggressive with her peers that she was unsuccessful in two preschool programs. Her parents said that these behavior problems continued but had grown less frequent and violent since Anna started kindergarten. Anna was evaluated by a developmental pediatrician at 6 years and 11 months of age, and she was diagnosed with severe ADHD. Anna was placed on methylphenidate but had an unanticipated response with a dramatic increase in irritability. Her parents stopped giving her the medication. Anna's reaction distressed her whole family, and her parents declined to try other medications, but they did attempt to reduce the amount of sugar in her diet with no apparent positive effect. A psychiatric evaluation produced a further diagnosis of oppositional defiant disorder, and Anna was described as "anxious". At age 7 and midway through first grade, Anna was made a "focus of concern" by her school district because of poor academic progress and increasingly problematic behavior. As part of her school assessment she was evaluated using a standardized test of intelligence, the Wechsler Intelligence Scale for Children-Third Edition (WISC-III; Weschler, 1991). On that test, her verbal IQ score was a standard 68 (below expectations), and her performance IQ score was a standard 90 (within normal limits). A fullscale IQ score was not calculated because of the discrepancy between Anna's verbal and performance scores. Factor scores in the areas of verbal comprehension and freedom from distractibility revealed significant difficulties while Anna's factor score in the area of perceptual organization was in the lowaverage range. On an individually administered academic skills measure, the Woodcock-Johnson Test of Achievement-Revised (Woodcock & Johnson, 1989), Anna received the following scaled scores: Broad Reading (75), Broad Mathematics (71), Broad Written Language (80), and Broad Knowledge (86). Her standard score on the Vineland Adaptive Behavior Scales' (VABS; Sparrow, Balla & Cicchetti, 1984) Adaptive Behavior Composite was 52, and the subdomain scores were Communication (50), Daily Living Skills (45), and Socialization (64). School district recommendations were to provide resource room assistance given her ADHD diagnosis, but no specific educational plan was developed to address her cognitive and academic difficulties. At the time of the FAS assessment, Anna's adoptive parents were confused and exhausted. They wished to understand how Anna's multiple diagnoses related to each other and how to maximize the effectiveness of her academic and mental health interventions. Team Assessment
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
The FAS clinic evaluation included an hour-long interview of Anna's adoptive parents and several assessments of the child (whose chronological age was 8 years and 1 month), which included a physical examination, an occupational/physical therapy assessment for soft neurological signs and fine motor problems, a specialized speech-language evaluation, and a limited amount of additional psychological testing. The goal of conducting these assessments was not necessarily to evaluate the full extent of Anna's development. Rather, it was to gather sufficient information to reach a diagnostic conclusion regarding the diversity and nature of her developmental functioning. Caregiver Interview A team physician and psychologist conducted an interview with Anna's adoptive parents. The interviewers guided the session to determine if Anna had the related conditions and functional impairments common in case of FAS. These questions probed the arenas of planning, behavior regulation, abstract thinking and judgment, information processing and verbal memory, spatial skills and memory, social skills and adaptive behavior, sensorimotor integration, and both oral-motor and motor control skills. Anna's parents seemed appropriately concerned but confused about the many previous assessments of their daughter that had apparent nonoverlapping diagnoses. They commented that they sometimes understood the antecedents of her angry outbursts (but often did not) and that Anna was basically loving and caring. Nevertheless, Anna had never enjoyed being held or hugged for more than a brief period time. Furthermore, her parents said that she had always been very sensitive to loud noise and to rough or scratchy clothing. Anna's parents noted that their daughter had difficulty organizing spaces; for example, she tended to crowd the letters of her name into one corner of a page and she could not put her toys away in their proper places. Her parents also agreed that their daughter had tremendous difficulty following directions. They reported that she generally failed to remember an instruction if more than a few minutes elapsed between the time the instruction was given and when she was expected to carry it out. Anna also could not…
Copyright Brooks Publishing – Do not reproduce without permission.
A Child with Fetal Alcohol Syndrome Sterling K. Clarren, Heather Carmichael Olson, Sandra G.B. Clarren, and Susan J. Astley Alcohol is a common human teratogen that, when ingested by a pregnant woman, can produce a wide array of fetal complications. The fetus's developing brain seems most sensitive to prenatal alcohol exposure: Alcohol-related brain damage can be quite diffuse, ranging from microcellular, neurochemical aberrations to macroscopic malformations (Stratton, Howe, & Battaglie, 1996). The neurological, cognitive, and behavior problems that arise from prenatal alcohol exposure are protean in their severity and diversity. Other prenatal determinants - for example, genetic factors or teratogenic exposures that lead to specific conditions, such as attention-deficit/hyperactivity disorder (ADHD) or learning disabilities-can further affect the developmental outcome of a child prenatally exposed to alcohol. Aversive experiences after birth and throughout life also can have a profound influence on an individual's performance in these domains. Complexity in etiology and outcome is the rule, not the exception, in working with children who have been exposed to alcohol. Fetal alcohol syndrome (FAS) does not represent the totality of individuals exposed to alcohol in gestation or the entire group of people with impairments related to prenatal alcohol exposure. Rather, FAS is defined by specific aberrations in growth, facial form, and central nervous system (CNS) functioning (Stratton et al., 1996). FAS is noteworthy because it can be specifically identified as a condition due to gestational alcohol abuse. Thus, it is an important starting point for outreach to women who are at high risk of having other children with disabilities. In addition, this designation assists government systems related to education, social service, and criminal justice in planning for service needs. The label FAS is actually less helpful for individuals who have the disorder themselves as it does not, in and of itself, guide parents or professionals in proceeding with interventions specific to the child. Moreover, the term excludes many individuals with the same degree of developmental delays related to alcohol exposure who do not have the diagnostic markers of FAS. Nevertheless, there are two important reasons to examine whether a child's impairments are related to alcohol teratogenesis, especially to FAS. First, knowing that alcohol exposure occurred during pregnancy helps a clinician understand that if the child has a complex profile of cognitive or behavior difficulties, then alcohol-related damage may be one antecedent in a larger set of etiological factors. Children with FAS or related conditions may generally have some combination of ADHD, learning delays, language processing and usage difficulties, problems in planning and judgment, or increased soft neurological signs. In addition, if the child is school-age or older, "secondary disabilities" may have emerged form experiences of frustration, failures, and lack of acceptance by peers and adults, particularly if the full extent of the child's disability has not been recognized. Clearly, a team approach to assessment and intervention is necessary for understanding such complex problems. A diagnosis often initiates an important spontaneous intervention by changing the attitude of family members and teachers working with the child, so they can see that the child "can't" rather than "won't" behave in an acceptable manner. Members of the child's community can then understand that the child is disabled and not simply disobedient (Streissguth, Barr, Kogan, & Bookstein, 1996). Second, recognizing that a child has FAS may help prevent prenatal alcohol exposure in the biological mother's future pregnancies. In an assessment of FAS, both the biological mother and her child are the focus of the team's efforts. Women who have children with FAS usually drink regularly and in high volume during pregnancy. Although it is true that women who consume alcohol in the gestation period may by committing "fetal abuse", the case of a woman drinking purposefully during pregnancy to harm her child is rare. It is therapeutic to inform biological mothers of this problem so that they know that the child is receiving appropriate supports and everyone can proceed in a positive manner. Although the process of working with the biological mother can be complex and involves a different group of professionals than those needed to assess the child, it is critical and ethically necessary that these
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
diagnostic and intervention efforts be linked (Astley, Bailey, Talbot, & Clarren, 1998). ASSESSMENT FOR DIAGNOSIS OF FETAL ALCOHOL SYNDROME The features of FAS are not dichotomous (present or absent) but, rather, each feature is on a continuum from clearly within the normal range to clearly the feature of FAS. Without suitable guides and standards, this leads clinicians to variable judgment in final diagnosis. To minimize clinical variability, the diagnosis of FAS or related conditions is made using a sequence of four 4-digit Likert scales (Astley & Clarren, 1997) in the clinics of the Washington State FAS Diagnostic and Prevention Network. Delays in growth, facial morphology, organic brain damage, and teratogenic exposure to alcohol are each evaluated separately. A "1" on any scale means a finding within the normal range. A "4" on any scale represents a finding that corresponds with accepted cases of FAS. A score of "2" or "3" specifically defines intermediate steps between clearly typical and atypical. It is important to note that these scales do not necessarily measure increasing severity; rather, they are scales of greater clinical confidence that the sought FAS characteristic is present. A child with a "4" for brain damage, for example, meets the medical criteria for a structurally altered brain but may be more cognitively or behaviorally within the normal range than a child with a score of "2" in whom the etiological relationship between brain structure and brain function is diagnostically indeterminate. Similarly, a child with a "4" for facial morphology has all of the facial diagnostic features of FAS yet may be somewhat more attractive than child with a score of "2"-who has an unusual face, but not the facial features common to FAS. The final category based on examination of the child is whether he or she has delayed growth. Establishing if a person's height or weight is "blunted", due to prenatal reasons, from its genetic potential is actually the most difficult part of diagnosis. Growth retardation is defined as a "4" when a child's measurements are less than 2 standard deviations (SD) from the mean after height (adjustment for mean parent height) and for weight. The alcohol exposure scale is judged by whether the dose exposure pattern approaches on that causes fetal damage in animal models and whether the information is documented or speculative. Dose response relationships between maternal alcohol intake and fetal outcomes remain complex and somewhat vague for various reasons. Obtaining accurate information on alcohol intake during pregnancy is difficult because it is almost always recorded in retrospect, with the potential problems of the mother's poor memory or denial. Many maternal and fetal factors also play key roles in determining if any specific dosing pattern is damaging to that individual. In the majority of animal studies in multiple species, it has been necessary to give high dosage exposures, with peak blood alcohol concentrations (BAC) in the 100-200 milligrams per kilogram (mg/kg) range, and to deliver them at least weekly for the first several weeks of pregnancy. Even these high doses are not uniformly teratogenic; they are "high risk". When women report consumption likely to cause drunkenness (an approximate BAC = 100 mg/kg or higher) on a weekly basis, this is considered a "4". Any other pattern of definite exposure is judged a "3" because no dose is guaranteed to be absolutely safe. The term FAS applies to children who have all "4"s or combinations of at least two "4"s and no more than two "3"s on the four scales. Other scores are converted to words in combinations of the descriptive terms: sentinel physical findings; static encephalopathy or neurobehavior disorder; and alcohol exposed, alcohol unexposed, and alcohol exposure unknown. A full explanation of this approach and its diagnostic terms as well as a method for judging the importance of these comorbidities, are available in the Diagnostic Guide for Fetal Alcohol Syndrome and Related Conditions (Astley & Clarren, 1997). The fetal alcohol diagnosis must be considered in the context of other prenatal and postnatal factors that contribute to the unique findings for each individual. CASE STUDY INVOLVING AN INTERDISCIPLINARY TEAM ASSESSMENT The FAS clinic team is comprised of individuals who help collect and interpret the data needed for diagnosis, assist in developing a comprehensive intervention plan, or both. Professionals are needed
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
from the disciplines of medicine, psychology, speech-language pathology, occupational therapy, social work, public health nursing, and family advocacy. It is also helpful to have a staff epidemiologist who can create data forms and databases and direct clinical research efforts based on these data. The remainder of this chapter presents the composite case of Anna, a child with FAS. This case illustrates the following steps in the diagnostic interdisciplinary team process: 1) preliminary team conference; 2) team assessment, including caregiver interview, physical examination of the child, and assessments of the child by occupational therapy, speech-language pathology, and psychology team members; 3) team deliberation; 4) case discussion and feedback to the parents; 5) additional case discussion and a therapeutic debriefing with the parents; 6) further case discussion and a therapeutic debriefing with the child (when appropriate); and 7) staff debriefing. Beside preserving patient confidentially, employing a composite case permits discussion of a combination of FAS characteristics that would not necessarily be found in any one case. Exploring the case of a primary school-age child allows a more extended developmental perspective. It also sensitizes the reader to the full scope of difficulties that children with FAS have by the time they reach elementary school, which generally are not clear in preschool. Overall, although Anna is fictitious, she presents the typical challenges in FAS diagnosis, treatment, and family support. Record Review and Preliminary Team Conference Anna's adoptive parents initially called the FAS clinic for an appointment. The family had been referred to the clinic by Anna's teacher, who had taken a workshop on FAS, and by her physician. As is frequently the case, Anna's doctor had not previously considered an alcohol-related diagnosis but agreed to the assessment when Anna's parents sought his advice (Clarren &Astley, 1998). The family had been sent an extensive intake form. This form was specifically designed to obtain historical data from the family that would help the clinic team reach a fair and complete conclusion. These data included 1) growth records; 2) childhood photos; 3) medical records of congenital abnormalities; 4) neurological problems and ongoing health issues; 5) previous evaluations of cognition and behavior; 6) reports of response to psychotropic medication; 7) specific documentation of alcohol exposure in pregnancy; 8) exposure to other drugs or additional complications during pregnancy; 9) academic problems or cognitive delays of the biological parents or their families; 10) a general overview of the family's genetic background; 11) reports of multiple placements and issues of caregiver attachment; 12) abuse or neglect; and 13) a general record of problems or difficulties with family, peers, and school. This intake form is available in the Diagnostic Guide for Fetal Alcohol Syndrome and Related Conditions (Astley & Clarren, 1997). At the preliminary team conference, these extensive past records were reviewed, and the following summary was presented to the clinic staff by the physician and psychologist. Anna was 8 years and 1 month old. She was born to married, Caucasian parents when her mother was 28 years of age and her birth father was 35 years old. This was the third live born infant for Anna's birth mother. Her pregnancy was complicated by extensive alcohol use. The birth father reported that he would generally buy one case of beer daily and that when it was available he and his wife would each drink about half of this amount in the evening. This level of drinking persisted through the first half of the pregnancy. During the second half of Anna's gestation, Anna's birth father drank more while her mother drank less, although she still probably ingested about a six-pack daily until delivery. Anna's mother also used marijuana about once a month and smoked half a pack of cigarettes each day. The pregnancy was further complicated by physical abuse of the mother by her husband, although this abuse never led to a medical assessment during the pregnancy. Both biological parents reported that their own fathers, but not their mothers, had been heavy drinkers. Neither biological parent reported significant academic problems, and both had finished high school. Anna was born at term, and her delivery was described as typical. At birth, she weighed 2.2 kilograms (kg) and her length was 44 centimeters (cm). Anna was always described as small. While in foster care, Anna received a nutritional evaluation and a thyroid screen. Anna grew steadily but more slowly than
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
typically developing children. One previous foster parent repeatedly asked her physician to hospitalize the infant because she ardently believed that her inability to "fatten the baby up" meant that the baby was ill. Anna had an inguinal hernia that was repaired when she was 9 months old. She had chronic problems with otitis media until she reached age 3, though she never had a documented hearing loss. Despite these problems, she had been in good health overall. After Anna was born, she lived with her parents for about 6 months, then she was removed from parental custody after the biological mother was several beaten by her husband. In addition, investigators found that the child was living in an unclean apartment without food or appropriate clothing. Six month-old Anna was placed in foster care and moved periodically over the next two and a half years while social service agencies determined that neither parent could control their drinking and regain custody. Anna was then made available for adoption and was retained by her last foster family (mother, father, and a brother 3 years older than Anna) when she was about 3 years of age. The adoption was legalized when Anna was almost 5 years old. At the time of the clinic visit, Anna's adoptive parents reported that she had shown behavior problems since 30 months of age. Sometimes Anna was very negative and aggressive, especially with family members, while at other times she was cooperative and pleasant. Upon entering preschool, she was reported to be quiet but soon showed qualities similar to those observed at home. In fact, she was so aggressive with her peers that she was unsuccessful in two preschool programs. Her parents said that these behavior problems continued but had grown less frequent and violent since Anna started kindergarten. Anna was evaluated by a developmental pediatrician at 6 years and 11 months of age, and she was diagnosed with severe ADHD. Anna was placed on methylphenidate but had an unanticipated response with a dramatic increase in irritability. Her parents stopped giving her the medication. Anna's reaction distressed her whole family, and her parents declined to try other medications, but they did attempt to reduce the amount of sugar in her diet with no apparent positive effect. A psychiatric evaluation produced a further diagnosis of oppositional defiant disorder, and Anna was described as "anxious". At age 7 and midway through first grade, Anna was made a "focus of concern" by her school district because of poor academic progress and increasingly problematic behavior. As part of her school assessment she was evaluated using a standardized test of intelligence, the Wechsler Intelligence Scale for Children-Third Edition (WISC-III; Weschler, 1991). On that test, her verbal IQ score was a standard 68 (below expectations), and her performance IQ score was a standard 90 (within normal limits). A fullscale IQ score was not calculated because of the discrepancy between Anna's verbal and performance scores. Factor scores in the areas of verbal comprehension and freedom from distractibility revealed significant difficulties while Anna's factor score in the area of perceptual organization was in the lowaverage range. On an individually administered academic skills measure, the Woodcock-Johnson Test of Achievement-Revised (Woodcock & Johnson, 1989), Anna received the following scaled scores: Broad Reading (75), Broad Mathematics (71), Broad Written Language (80), and Broad Knowledge (86). Her standard score on the Vineland Adaptive Behavior Scales' (VABS; Sparrow, Balla & Cicchetti, 1984) Adaptive Behavior Composite was 52, and the subdomain scores were Communication (50), Daily Living Skills (45), and Socialization (64). School district recommendations were to provide resource room assistance given her ADHD diagnosis, but no specific educational plan was developed to address her cognitive and academic difficulties. At the time of the FAS assessment, Anna's adoptive parents were confused and exhausted. They wished to understand how Anna's multiple diagnoses related to each other and how to maximize the effectiveness of her academic and mental health interventions. Team Assessment
From Guralnick MJ (ed.), Interdisciplinary Clinical Assessment of Young Children with Developmental Disabilities Baltimore, Maryland: Paul H. Brookes Publishing Co., 2000; 307-326.
Copyright Brooks Publishing – Do not reproduce without permission.
The FAS clinic evaluation included an hour-long interview of Anna's adoptive parents and several assessments of the child (whose chronological age was 8 years and 1 month), which included a physical examination, an occupational/physical therapy assessment for soft neurological signs and fine motor problems, a specialized speech-language evaluation, and a limited amount of additional psychological testing. The goal of conducting these assessments was not necessarily to evaluate the full extent of Anna's development. Rather, it was to gather sufficient information to reach a diagnostic conclusion regarding the diversity and nature of her developmental functioning. Caregiver Interview A team physician and psychologist conducted an interview with Anna's adoptive parents. The interviewers guided the session to determine if Anna had the related conditions and functional impairments common in case of FAS. These questions probed the arenas of planning, behavior regulation, abstract thinking and judgment, information processing and verbal memory, spatial skills and memory, social skills and adaptive behavior, sensorimotor integration, and both oral-motor and motor control skills. Anna's parents seemed appropriately concerned but confused about the many previous assessments of their daughter that had apparent nonoverlapping diagnoses. They commented that they sometimes understood the antecedents of her angry outbursts (but often did not) and that Anna was basically loving and caring. Nevertheless, Anna had never enjoyed being held or hugged for more than a brief period time. Furthermore, her parents said that she had always been very sensitive to loud noise and to rough or scratchy clothing. Anna's parents noted that their daughter had difficulty organizing spaces; for example, she tended to crowd the letters of her name into one corner of a page and she could not put her toys away in their proper places. Her parents also agreed that their daughter had tremendous difficulty following directions. They reported that she generally failed to remember an instruction if more than a few minutes elapsed between the time the instruction was given and when she was expected to carry it out. Anna also could not…
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